🪳 Cockroach Cafe 🪳 Autumn 2023

[MereDintofPandiculation]

I’ve just done the autumn deepclean, brought in a load of logs, and made sure we have plenty of rugs and throws, and toasting forks and marshmallows. I’ve even brought in extra rugs from the Good Daughters’ room under the stairs - they’re not needed there, no-one ever uses it.

Come in when you want to share good news, or to rant, or to ask a small question that doesn't warrant its own thread. Or just to hang out with others who understand what you're going through.

For newbies: why cockroach? Previous long term resident of "Elderly Parents" Yolo's DM attended a 'small animal event' in a nursing home, and was presented with a "small animal with a hard back" the name of which species she couldn't remember. Her ever helpful DB suggested cockroach, and it has become a toast on here. So 🪳 mes amis/amies, and may you all live to fight another day.

MsJinks It sounds as if there were carers pre EOL.... And that you need them back in place. I had no idea til I was told last week that 'palliative care' can last a long time.
You've got to try to protect yourself a bit, mentally and physically.
I know it varies geographically but I was also told last week that there is 'hospice care at home' available, sorted out by district nurses. Is that something you could look into in your area? Again, there's no expectation that death is imminent.
It sounds like you're doing an amazing job for your mum but you're not superhuman. Please try to get help in and look after yourself...

Hi - thank you for your thoughts - there was a care package in place and essentially she has the same one, though under different funding and doesn’t include the previous medication collection (a personal annoyance this week 🤦🏻‍♀️).
So that’s the 4 calls per day - morning, dinner, tea, bed and they do the physical stuff now such as pad/moving for pressure sores. But it’s just 30 mins a call and I often have to be around supporting.
I have some help from my kids as one (herself working as a carer) is going to stay over once a month, which is awesome. I have 1 day/week 10-2 from her too though it varies with her work. Every other Friday 10-2 a different child and then random visits from another dependent on her shifts and if I need anything doing/fetching. Obviously the day ones let me do work meetings/chores outside the home/etc - but so helpful- I don’t want to put on them more - didn’t want anything necessarily but they insisted - and I’m glad!
I’m super fortunate with work but it can’t continue long as is and after Xmas I’m going to be asking care co about sit ins - this will cost but her regular care is not charged now - so I’ll see if it could even out - I could get a day at work AND a break as they are around 11 hours!! I have to make sure they are one my ma likes as she can be particularly rude about some carers - she prefers the guys 🤦🏻‍♀️ - she also ‘misses’ me when I’m not in the room with her - but training her slowly on that.
If I take it a day at a time I’m ok - thinking about a long time floors me a bit.
I am tired as her sleeping is poor and she goes to bed later than my choice but I’m taking vitamins- which must be a good thing anyway right! Small wins!

@MsJinks can't the meds be posted? Mum's are posted to my house.

I spent yesterday morning on the phone. I was with DH when medic A agreed an appointment with him at the local community health centre. Then yesterday a text dropped on to his phone confirming an appointment at a hospital the far side of the city. He’s had his fill of everything medical, so I left him cleaning the kitchen while I went and made phone calls to see which appointment he should attend. Turns out, neither! No record of either on the system. But he did have a long phone call from medic A.

we’re probably now on record as a couple of confused old dears who can’t manage our appointments.

Sometimes I really don't understand whats going on with my DM.

Earlier this week my nephew had gone downstairs early (5.30am) to find DM sat at table having made herself tea and breakfast. He asked her if she needed help going back upstairs and getting into bed, which was declined as unnecessary. 3 hours later my DSis went into DM's room. DM was in bed but said she was unable to get out of bed by herself, needed to be half carried to her commode and then DSis had to hold cup while DM sipped tea out of it. This happens frequently. Same with getting into bed -DM tells DSis she needs help getting onto the bed and DSis has to physically lift/pull her on. But every day, usually more than once, DM goes and gets herself on the bed for a rest.

A similar thing happens with the garden path. DM let's the dogs out and then walks down the path to look out of the gate. Yesterday it took 2 people to support DM down the path to the car and all the while she was stumbling and begging people not to let go because she would fall.

I'm concerned because my DSis looks "done in" with the physical effort of helping DM. I'm worried about my sister's health.

MissMarples, possibly a mix of 1. Physically up and down at different times (with a couple of my mum's conditions, she can be surprisingly ok and then not OK at all), 2. Masking for some people and not for others (depends on who she's trying to 'impress' - I used to say that my mum was kept alive by pure pride),3. Could she be being difficult?... not quite on purpose as such, but even without obvious cognitive impairment, older people can take on new and frustrating ways of behaving.

Phone call at 5am this morning. Nan 'just needed to talk to someone'. I gently explained it was bloody 5 o clock in the morning and I would be happy to talk at a normal hour! She is frequently doing this - waking up in her chair and not knowing whether it is morning or evening. I've suggested checking out the window for traffic or looking at the clock on the TV but for some reason she doesn’t seem to understand the 24 hour clock...

@Nodancingshoes I am not sure if this will help but you can get ‘dementia clocks’ that have little symbols to show whether it is day or night etc - they are plug in with iPad size screens and can be 24 hour or not. We bought MiL one but of course she said she didn’t want it turned on.

My mum had started this before she was doubly ill - calling at 9pm to tell me she’d been left in her chair all night - it took me going up to realise she was confused with am/pm. She has Alexa who does an/pm and a clock on her table says time in 24hr - she could not believe it was evening and kept checking Alexa and all clocks. She did learn that this happens to her though and tries to pretend it hasn’t like when she tells me to go back to sleep at 2 in the afternoon and I remind her it’s afternoon and then she pretends she knew all along.
As carers were concerned at first, as I was, GP came out and decided it may be a TIA and we spent a day in hospital checking it out - there that consultant decided it was her epilepsy and upped her anti seizure meds - though my mum denies ever having epilepsy so that confused her 🤦🏻‍♀️ - also confused her it kept happening- as she acknowledged she had meds ‘to stop it’ at least if not for seizures!
What a palaver for not much - as it seems common - I should have directed all the drs to here!

@countrygirl99 - thank you and yes I have organised delivery now - it annoyed me as I was expecting carers to fetch them, and at first they told me they would, they didn’t tell me it was no longer on their plan for her until after I queried the length of time it was taking to get them - would have been ideal to be informed of the change in care package really. it does seem random to remove that from a package when it is harder for family to collect- previously I could have made that work more easily than today - but she originally paid as they deemed commode, assistance walking, meds, pressure management fell under ‘social’ care not health care and got a fuller package than the continuing care.
I am over it now - it was an all round bad day and I was being a bit mardy 🤦🏻‍♀️🤣

@MsJinks mardiness comes with the territory!

I had the time confusion with my mum. She would ring and say that she had been sitting on the bed waiting for the carer and she wanted her lunch. "It's 2 o'clock - why hasn't she come?" I bought her a "Gro Clock" which had a blue screen with a moon for night time and a yellow screen with a sun for morning but she couldn't grasp it. "I thought the blue was blue sky for day time!"

My brother bought mum a dementia clock which she pronounced ugly and it's never been seen since.

I knew my dad would be offended by the dementia clocks with pictures on, so I got one which spells out “Tuesday evening “ “Monday morning” etc.

I will have a look for an AM / PM clock. She rang at 6pm tonight and asked whether I had only just got up.. I wish Nan, I'd been up for about 12 hours by then!

@MereDintofPandiculation yes it was Flamingnoravera! I added the Mx after a strop about prefixes and Ms being used to signify divorce according to DBS checking service.

DBS are saying Ms = divorced??!! How can they be that ignorant?

@Mxflamingnoravera Just read your earlier thread. It's outrageous!

I had to stop reading it Dint it upset me too much. It all started out just fine with kind and sensible advice, and then suddenly it was as if a tsunami of dementia warriors appeared accusing me and mum and the care home of abuse and I had to stop. I'm going to see her tomorrow, I hope it will be a nice calm chatty visit with no anxiety.

My DM uses her phone as a clock when she's in bed, so various people - usually me - often get a call at some odd hour because she's checked the time and dialled a number by mistake. It is very disconcerting to be woken by a phone call in the early hours; my catastrophising mind starts racing along with my heart.

Its so very hard to get elderly people to change something: "Put the your clock here mum, then you'll be able to see it if you wake in the night" just results in the clock being back across the far side of the room next time I visit.

Hope things go well @countrygirl99

Thank you @Mum5net. Just trying to work out how late I can leave it to get dressed in funeral atire. Don't want to risk going covered in white dog hairs (how come they never seem to shed the black ones?)

Oh dear, crossed purposes! I meant your DBS thread which came up when I was searching for any DBS guidance on titles. Will now go and search out your other other thread!

Never? Try wearing some white trousers

Haha @MereDintofPandiculation that was a while ago now. I would hope that DBS may have changed the logic flow in their form by now! But something in me suspects they have not.